Enhancement of the positive role of the people with disabilities in provision of health services

Non governmental organizations play an important role in providing care and support communities, either directly or by working as mediator between the government and the community. They are well accepted and trusted by the community; therefore they can multiple arms of services reaching diversified target groups of cultures, economic backgrounds and ethnics. Participation is one of the important features of communication between these organizations and their target group. Many pattern of participation can be tracked, ranging from very active participation to very passive participation. Passive participation means that the community receives services without the ability to make any decisions or intervene to change circumstances regarding the service. Many factors govern the nature and the behavior of a particular group towards a service provider. These factors could be the background of the target group, their experience with the services provided, community values, acceptance of the communication, etc. The most participative organizations are those who did a real home work to understand clearly what are the key factors for more participation, such as prioritization, level of the services to the community or resources available.

There is a wide range of local and international organizations providing support to  people with disability. Interventions with the people with disability focus mainly on capacity development both physically and mentally. However many organizations focus on provision of health care services as well. In regard to creation of an environment supportive of positive participation of beneficiaries, these organizations are expected to have different experiences. Identification of a health care program priority for people with disabilities is difficult. Mainly, different experiences can be attributed to the specific nature of the target group. Community perception, staring at the household level can be a stimulant or hindrance to the expected social role of the people with disability. But here we want to focus on their role of the decision making procedure and their involvement in designing and provision of health care services to differently able people.

Under this context, I would like to focus on community public health services. Provision of health services to people with disability can be a challenge. Organizations serving differently able people should draw a clear line between the socio- medical status of the people with disability and the urgent need to receive health care support, and this should not exclude the need for health education, awareness raising and creating leadership skills within this target group. Assessment done to identify public health priorities for this target group is critical and can be subject to many biases. What is the basis for assessment questionnaires and who are the respondents? Often, the family members tend to become protective towards people with disability– disability could be due to different reasons like accident, hereditary or elderly age disability- when it comes to assessment and questioning, the closest family member will often try to intervene. So an external person might influence the assessment of the health care needs for this group. The situation is more aggravated when the people with disability suffer from a problem that affects senses of communication; mental retardation, hearing disorders of deafness, muteness, and blindness. Then, any communication must be done with other person. I can say roughly that; the results of assessment of health care needs for people with disability will extremely be influenced by the experience of their surroundings.

In my country, there is a lot of exclusiveness in the public health awareness raising campaigns. Most of awareness raising program, which focus priority health topics like HIV/AIDS, FGC/M, family planning methods, malaria and other health education topics didn’t have special mechanism for inclusion of people with disability . Most of the Information, Education and Communication (IEC) materials are not sensitive to the needs of this group. This fact put more pressure on the organizations designed solely to reach this group. They have to work hard to fill this gap. Capacity is an important issue to this regard. The number of organizations providing support to people with disability is not proportionate to the number of organizations providing support to other target groups, even the level and scope of intervention is not comparable. Absence of information makes it difficult to obtain figures from the national database which could support this comparison. This might be the fact that national and international capacity developments efforts are not effective enough support to organizations providing health care support to people with disability. The multi-faceted nature of the issues related to people with disability makes it necessity to apply more structured coordination between the institutions of health, education, and social welfare among others. A comprehensive Capacity Development framework (result oriented) is urgently need for the organizations providing services for this group.

Several questions are spontaneously raised every time I think or read about health services to people with disability. I assume that several people might feel the same. Therefore I would like to hear your thoughts, answers and feedback on the following questions:

1. What is the political general position towards the people with disability? (Health and development policies, statistic data, bilateral and multilateral agreements, funds…). I believe that different countries have different situations. What do you think?
2. Who are the active partners globally and stakeholders at the local level? Which support is provided? (Capacity development, welfare, community outreach…)
3. How far the support provided- either by national or international actors- could create leadership within these groups? What are the best practices and what are the lessons learnt? (Empowerment, leadership skills, openness to talk, feedback…)
4. Are there any study that focuses mainly in providing evidences that could improve the participation of people with disability in policy making and program designs?
5. How can we include the people with disability - as beneficiaries- in the result chain without using them as indicators for data collection, but by having them understood the result and the MdfR?
6. And my question to ourselves, how do we plan- or may be there already something done- to capture issues of people with disability in our discussion in this website, but also at the ground

People with disabilities should take central role in the development processes. They should get equal chances for participation of what plans have put at a place to benefit them, and that should include the involvement at all the aspects of project cycle. Capacity development is important to the institutions serving them, but capacity should be assessed as how far people with disability are directly included in the capacity development programs, and how far they could participate in management of the health program. And there we can say, people with disability are becoming leaders.

I would like to exchange experiences and lessons learned with the other colleagues in the MfDR. From your experiences, I would like to know what the best practices. What are the main challenges? What are the issues we should consider when planning an outreach or capacity development for organizations serving people with disability?

I am really looking forwards to have an interactive online discussion and information sharing.